13-year-old Swinton schoolgirl Robyn Newell is fundraising to help young children with serious and life-threatening heart conditions to experience life to the full.
The Ellesmere Park High school pupil lives with Marfan Syndrome, a rare genetic illness which causes a litany of medical problems which affect the eyes, chest, heart, lungs, bones and blood vessels.
She’s spent almost her entire childhood in and out of hospital, including laser keyhole surgery once every 6 weeks for over two years in primary school.
It means she’s heavily restricted – anathema to a teenage girl who just wants to go out with friends and enjoy herself.
“You can’t go to sleepovers because parents are worried something might happen, you can’t go to afterschool clubs, you can’t go to the park by yourself.
“You just feel rejected and upset. I was 12 when I found the Children’s Heart Association and now I have places I can go.
“I want the three or four year olds who have the same problems as me to experience that trust, that hope, to see that glimmer of light at the end of the tunnel.”
You can donate at Virgin Giving here
Robyn hopes the sponsored Bounceathon at Jump Nation in Trafford Park will help to sustain the Children’s Heart Association for the years to come.
She described the extraordinary feeling of having a heart that doesn’t work properly.
“When I had my last episode I got palpitations, my heart when up to 250 beats a minute. I felt like someone had opened up my chest, put a fish inside there and sewed me back up again.
“But there are so many kids out there who are worse off than me – and you can’t imagine how much of a difference it would make to take these kids out on a trip or a holiday somewhere outside their safety zone, to places with new buildings, new scenery, even different accents!
“It would just be incredible for them.
“I went to the Children’s Heart Association and they make you feel welcome, and safe, because the Cardiac team’s there, so nothing’s going to go wrong.”
Despite the constant knockbacks some clubs have taken her on like SPARKY, which is run by Salford City Council, and The Lowry, who have allowed her to do acting classes.
And Robyn has nothing but praise for her school: “It’s the best school in the world.
They help by letting me go up the lift because I can’t use the stairs, they make sure font is big because I can’t read 14 point I can only read 18 or 20.”
You can donate at Virgin Giving here
Robyn added: “If you donate I just want to say thank you.
” And on behalf of all the other children who can’t tell you themselves: thank you so much.
